Hope-
Today, I got hope. I got a much anticipated email from the Transplant Socical Worker. Fundraising may not need to be as drastic as we once thought. Medicare will pick up on a lot, she has asked us to call when we get the enrollment forms and she will guide us through so we get the best policies. Woo hoo. This is such good news. So, it sounds as though most of our fundraising will need to be for his 1 week hospital visit in April and anything that may come up between now and February. What a HUGE relief. This is such fantastic news.
Dusty goes in to have his blood drawn again. His bili as been down the last two months, last month he was at 12.4 (normal range is .1-2.0), so hopefully he will keep that trend up. He has also looked a little less yellow the last week or so. He has also gotten a little more social and been hanging out with some of his friends-a good thing.
So all in all we are on a high note-but cautious about it. We all know it only takes a mild fever to take him down fast.
But I just had to share the good news.
Cheers-
Monday, September 25, 2006
Thursday, September 14, 2006
Fundraising
Fundraising
So we're gonna take the plunge and fundraise. This should be interesting. I, myself have the HUGEST issue with asking for help-and now, I am going to get to ask people for money-so that we can some how come up with the enormous amount necessary to sustain Big Bird-ah hem-my brother. (Of course he would prefer me to call him a Sith-he is an avid Star Wars fan and thinks he is gonna go as a sith for Halloween since he already has the eyes for it-he truly is a sicko-no pun intended)
This will definately be a lesseon in humility for me.....One I will not take lightly-but none the less deal with and beg for your kindness.
We will more than likely be going with NTAF, or National Transplant Assistance Fund, www.transplantfund.org. When the accounts and everything are set up and we have direction I will post.
So we're gonna take the plunge and fundraise. This should be interesting. I, myself have the HUGEST issue with asking for help-and now, I am going to get to ask people for money-so that we can some how come up with the enormous amount necessary to sustain Big Bird-ah hem-my brother. (Of course he would prefer me to call him a Sith-he is an avid Star Wars fan and thinks he is gonna go as a sith for Halloween since he already has the eyes for it-he truly is a sicko-no pun intended)
This will definately be a lesseon in humility for me.....One I will not take lightly-but none the less deal with and beg for your kindness.
We will more than likely be going with NTAF, or National Transplant Assistance Fund, www.transplantfund.org. When the accounts and everything are set up and we have direction I will post.
Tuesday, September 12, 2006
I'm Yellow For A Reason
Ah, well the Blog is called "I'm Yellow For a Reason", well this is true, only, I'm not yellow, that would be my brother, Dustin.
He has esstentially been sick since he was 15 years old. He broke his leg, then things went down hill from there. He had started to pass blood and would get these insanely low blood counts, into the hospital and he would get better. They did several tests and discovered he had "Crohn's Disease". Well fast forward a couple years, he moves to Austin and lives with me, he has a bad bout' so off the the ER we go-(where we found his current and fantastic Doctor I might add). After blood tests, colonoscopy we find that in fact it is not Crohn's disease, but Ulcertive Colitis. Ah, managable. He gets that under control, then a couple years later he starts showing some abnormal LFT's (Liver Functions). So, they decide to investigate, and they find this rare disease called Primary Sclerosing Cholangitis (http://www.liverfoundation.org/db/articles/1015) -forever more known as (PSC) on this blog anyway.
He was officially diagnosed with PSC in July 2000. At that time we were told that he would need to look at Liver Transplantation in 3-6 years. It was an "ohmygosh" scenario. But, by all accounts he seemed fine and normal (well as normal as he could be-those who know him could dispute that by his insane goofiness). Life went on, he moved to Idaho for a couple years (2003) and was hospitalized once for this lovely disease. He moved back to Texas in August of 2005 to help deal with some family drama-(and this still goes-but we have had to move past that and that scenario deserves a blog all it's own-but for lack a sanity and well being we will just leave it alone). In February 2005 he went in for what he referred to as an "oil change"-he had an ERCP done, with stents put into his ducts. He had them in for a few months, then had them removed in June 2005. In July 2005 after the follow-up appt from the removal we were told that "stenting" would no longer be an option for him. He has to much scarring occuring on his bile ducts for ERCP procedures to be of benefit to him. We were then told that it was time to start the process to be referred to the Transplant Center.
Well the kicker to Transplant Center, is you have to have insurance or LOTS of money. A liver transplant can cost (by the time you add in evaluations, surgery, 1st year medications etc is almost $400,000.00), http://www.transplantliving.org/beforethetransplant/finance/costs.aspx
oh yeah, way more money than I could imagine making.
Dustin will be eligble for Medicare benefits in February 2007. He will at that time be referred to the University Health System at San Antonio http://www.universityhealthsystem.com/transplant/index.htm
But as we are learning there will be expenses with Medicare-so I am delving into the research of what that is going to cost. Our government has some serious issues with what they consider to be poverty and what they think people should be able to afford and little money. But that is a soap box I do not have the energy to deal with, but will tackle when we get my brother healthy.
Stay tuned, we are looking at funding options-looks like we will do some fundraising to cover costs that will be necessary that are not covered with insurance (such as food and lodging and parking fees etc.) It is even possible that temporary re-location might be necessary as San Antonio is about 2 hours from where we live and if immediate care is needed that isn't an option. Oh the things we are learning.
Well this is enough for now. I will post again later. Cheers!
He has esstentially been sick since he was 15 years old. He broke his leg, then things went down hill from there. He had started to pass blood and would get these insanely low blood counts, into the hospital and he would get better. They did several tests and discovered he had "Crohn's Disease". Well fast forward a couple years, he moves to Austin and lives with me, he has a bad bout' so off the the ER we go-(where we found his current and fantastic Doctor I might add). After blood tests, colonoscopy we find that in fact it is not Crohn's disease, but Ulcertive Colitis. Ah, managable. He gets that under control, then a couple years later he starts showing some abnormal LFT's (Liver Functions). So, they decide to investigate, and they find this rare disease called Primary Sclerosing Cholangitis (http://www.liverfoundation.org/db/articles/1015) -forever more known as (PSC) on this blog anyway.
He was officially diagnosed with PSC in July 2000. At that time we were told that he would need to look at Liver Transplantation in 3-6 years. It was an "ohmygosh" scenario. But, by all accounts he seemed fine and normal (well as normal as he could be-those who know him could dispute that by his insane goofiness). Life went on, he moved to Idaho for a couple years (2003) and was hospitalized once for this lovely disease. He moved back to Texas in August of 2005 to help deal with some family drama-(and this still goes-but we have had to move past that and that scenario deserves a blog all it's own-but for lack a sanity and well being we will just leave it alone). In February 2005 he went in for what he referred to as an "oil change"-he had an ERCP done, with stents put into his ducts. He had them in for a few months, then had them removed in June 2005. In July 2005 after the follow-up appt from the removal we were told that "stenting" would no longer be an option for him. He has to much scarring occuring on his bile ducts for ERCP procedures to be of benefit to him. We were then told that it was time to start the process to be referred to the Transplant Center.
Well the kicker to Transplant Center, is you have to have insurance or LOTS of money. A liver transplant can cost (by the time you add in evaluations, surgery, 1st year medications etc is almost $400,000.00), http://www.transplantliving.org/beforethetransplant/finance/costs.aspx
oh yeah, way more money than I could imagine making.
Dustin will be eligble for Medicare benefits in February 2007. He will at that time be referred to the University Health System at San Antonio http://www.universityhealthsystem.com/transplant/index.htm
But as we are learning there will be expenses with Medicare-so I am delving into the research of what that is going to cost. Our government has some serious issues with what they consider to be poverty and what they think people should be able to afford and little money. But that is a soap box I do not have the energy to deal with, but will tackle when we get my brother healthy.
Stay tuned, we are looking at funding options-looks like we will do some fundraising to cover costs that will be necessary that are not covered with insurance (such as food and lodging and parking fees etc.) It is even possible that temporary re-location might be necessary as San Antonio is about 2 hours from where we live and if immediate care is needed that isn't an option. Oh the things we are learning.
Well this is enough for now. I will post again later. Cheers!
Subscribe to:
Posts (Atom)